Has anyone here ended up with permanent disability/illness as a result of being forced to care for elderly parents?

Yea stress can do a lot to us you have to get help and take time out unless your ready for someone to take care of you

freqflyer - oh, yes! Between trips to the ER, follow-up appointments, regular check-ups ad infinitum I have seen enough doctors to have a medical degree! It is sad when talking to the staff at the doctor's office is considered your social outing.

What a great thread this has become; so many points of view. No right or wrong, just coming from different places in life and experience. It certainly has touched many of us. Just what this site is meant to be - a safe place to learn, vent and support. Hugs again to all who travel this challenging road.

Thank you everyone. It's a relief to know that I'm not the only one with health problems and thinning hair since being a caregiver for 7 years. The only difference I see in the previous posts is that it's not a parent that needs care. My husband who is 85 and thinks he is still in his 30s has Alz. We live in a Co-op and I work here. Since I am only a few yards from my home, I don't have help for him. He sometimes comes to the office where I work and sits and watches me. I only work 4 hours a day but taking care of my love is a 24 hour job. Sleep is getting to be unheard of. Naps are helpful. (He takes many during a day) I don't feel sorry for myself but I do realize that I need help. I have developed COPD and sometimes find it hard to breath. But I love my man and I will do whatever it takes to keep him going. By the way, I do see my doctor on a regular basis and do everything he tells me to. The biggest problem is weight gain. I hate it.

I cared for my elderly mother after her ministroke and broken hip with dementia. She lived 30 minutes away in her own home with a 24 hour caregiver I hired, but mom didn't want someone 24 hrs so I hired someone a few hrs a day. I still did all her grocery shopping and taking to Drs until my health started to deteriorate. I had to have hand surgery the i had a varicose vein burst and needed surgery, but mom broke her hip and i had to get her into a rehab before i could schedule my surgery. Then 2 years later I started bleeding vaginally and was going to skip my GYN checkup. Thank God I only waited 2 months because i was diagnosed with uterine cancer at 53 yrs old. I told the Dr all the stress i was under and i can't be cut for a hysterectomy and because I am overweight and in need of a hip replacement too. So he recommended a high risk surgeon do do the hysterectomy laproscopically so no cutting me open and I had no need for rehab. My need for a hip replacement and now need both knees replaced also did get much worse. Towards the end of caring for my mom for the 5 yrs I depended more on the aide who lived in my mom's town and a wonderful friend and neighbor of mom's to help with groceries and taking her to Dr appts. I have a halfbrother who only visited once a year and only 2 times the last 6 months she was in a nursing home. I sold mom's house and had to clean it out by myself. I am a stress eater so I never lost the weight needed to get my hip replaced and i am now house bound at age 60. I can't bring myself to get stomach surgery to lose the necessary weight to get my hip replacement so i am now disabled and a widow. My husband died suddenly at age 52 three months before my mom had her stroke. My mom was not a pleasant person either, I couldn't do anything good enough for her.

I agree that it isnt a blessing to have elderly family members. my mom is 83 yrs old and her sister is 98 and still going strong. My mother is visiting my sister out of town. She will be gone for three weeks. I dread the day she returns. She is overbearing. My biggest fear is that she will have to move in with me and my sister. My mom feels that she should go everywhere my sister and I go.

Sole caregiver of MIL? Where r her kids. Bad enough if ur parent is a pain but taking care of a non-parent? No way would I have taken care of my MIL. She was nice to friends but different with DILs if they didn't do what she thought they should she talked and lied about us. My husband would have carried that responsibility. She would have had heer SS and pension. That would have been used to have aides to do her showers and sit with her if we wanted to do something.

Christine73...AMEN, even tho the patient may now be in a care center or nursing home environment and you may not be doing as much physical labor to tend to them (bathing, turning, etc), we still are a caregiver with the constant phone calls, visits, bills, maintaining their home, doctor visits, therapy, family consultant and much more!

Have to ad, I would have helped my husband just like he helps me. Being in a split level I wouldn't have been able to have Mom with all the stairs. I feel, if possible and money is there, caregivers should take advantage of what is available. I hate that our society has made us feel "they did for us". I feel out of 4children I'm the one who has been here for both parents. I feel my responsibility to my Mom is to make sure she is safe, clean, fed and loved. But, at 65, I don't plan on caring for her in my home for a long period of time. She had her life, I'm entitled to mine just like my siblings.

Kala, this is true. I can't wait till Moms house is sold. If I can't get her into an AL at least it will free up money for sitters and respite.

joyfuljo, you wrote "I seem to be growing more bitter towards family members, and I hate how they are always telling me about the trips they are taking and what fun they had on the weekend, etc"....and I bet these are the same family members who promised they'd always be there to help you, give you a break, right? Sigh....My father was in a nursing home for several months after breaking his first hip and mid-stage ALZ and Dementia. Family BEGGED me to please bring him home and they all promised to come help out, watch him, give me breaks, entertain him, help cook, anything they would say "Just Ask!" with a smile...and I would ask and maybe, maybe if I was lucky, get someone there for maybe 2 or 3 hours so I could do grocery runs, go to my own home, run to the office to sign for let more unpaid leave, hopefully see my husband for 20 minutes or some quiet time to just lay in my own bed and sob. Meanwhile, my father would be burning up the phone lines calling me every 10 minutes demanding I get back HOME to take care of him....yeah, tell me about how resentful it can be...coz I HEAR YOU loud n clear. Don't feel guilty for feeling this way.

Globetrotter, you wrote "...that a person can live a long time with dementia; it is a very slow degenerative process that eventually leads to death...". Lord, yes. And they will decline and seem at death's door to the point the Hospice Director is sitting with you to finalize funeral plans...then the next day the patient is up and chipper and verbal again...repeat for years.....ALZ/Dementia is not like other diseases that have a pretty standard progression (such as cancer, you pretty much know how the cancer will progress from PET scans and such) but with ALZ, each case is different, each patient is different. Some late stage patients live a year, some can lives for YEARS.....A lot of Hospice agencies just getting in to caring for ALZ patients are just learning this; they are used to the more 'end of life for progressive diseases, heart failure, kidney failure, cancer, etc'.

FreqFlyer, you wrote "what if you were unable to transfer your parent from bed to bathroom? Or feed them? Or dress them? Or pick them up if they fall?". That is when you have to pay out of pocket for home health care and pray they don't quit before their shift is over. Since my father does not qualify for Medicaid due to owning property and his insurance REFUSES to pay for a nursing home since ALZ is considered a mental disease in their OUTDATED ignorant policy book, we have to pay for his monthly care center costs. His pension and SS pays for the bulk of it but we pay the remainder. His insurance (which is very odd coz his insurance is used in lieu of Medicare) does not cover "Custodial" nursing home costs. Even tho he has a multitude of physical issues, the ALZ is the primary diagnosis, therefore they will not pay.

cmagnum, you wrote "Slavery is alive and well in the US despite the civil war! It's just emotional/psychological. It's chains are invisible and yet very real as well as very difficult to break. There are three major books about this emotional slavery..."....just want to say THANK YOU so much for writing this. AMEN. Thank you once more. Also, yes, another issue I forgot to mention in a previous post is the heart and blood pressure issue that so many care givers start having, I keep seeing it over and over in so many replies to this thread. Once I became very ill and my pulse was so fast, I could not time it. I went into a seizure as I was trying to get out of bed and take my blood pressure, my husband happened to be there with me. EMT and Fire Rescue came to the house, b/p was 220/110 and I had several additional seizures while they were there. I was taken by ambulance to the ER and had surgery shortly after for irregular heat beats (PVCs premature ventricular contractions). Yet my father would run into the couch with his wheelchair, over and over, bumping, bumping... screaming at me to GET UP AND PAY ATTENTION TO ME as I would beg for just 10 minutes of rest so my meds could work. this is why he is now in a care center. Why when he would attempt to get out of his wheelchair and fall and I would try to catch him and he would land on me (fractured wrist, sprains, cuts on back, etc) and he would just say "I'm not hurt at all, cool. Now let's go somewhere fun"...And I still ENVY those with 'happy patients' who are not a bit of bother in the world and are a joy. I just wish.....

OregonGirl, you wrote about needing to change to white sheets because the family member kept thinking the patterns were 'things'. There is some really good info online about how the sight changes in ALZ patients.
How some patterns seem almost 3D to them and they think they can reach out the touch and touch the flower or object in the wall paper or sheet pattern...... eldercareteam/public/677.cfm
The Alzheimer's Eye Sees Things Differently
distracting visual information (such as patterned wallpaper)
Sight, perception and hallucinations in dementia
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1408

I am on the other end. I take care of the elders placed in long term care. I am baffled by those of you who take on the role of caregivers at home to your loved ones at the expense of your own health and welfare.
In a facility you can come and visit and the visiting hours are very liberal. If medically approved your loved one can go home for an overnight visit and can leave on approval for just the day. I hear adult children say how your parents took care of you, and now it is your turn. I do not feel the comparison is equal. Children grow and mature into self sufficient human beings. This process starts early on. You will not have to change your child's diapers forever. Nor will you have to keep feeding and dressing them . I am talking about those children with patterns of normal growth and development.
Older people with diagnosis of dementia and Alzheimers with time only continue to decline and present even more health and behavioral problems. In a facility a team of healthcare providers are utilized . At home it is just you.
I love what I do but it is doable because my shecdule consists of a shift and days off that give me a good life balance. Those of you who are the primary caretakers at home may not have this kind of flexibility. Please reweigh your options. You deserve a life too.




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Thank you Aveeno! I know we are all trying our best, we get frustrated, yet we try. I'd like to thank all of you for sharing. It leaves me in a good place knowing I'm not alone in this journey and that there are others I can share and exchange information with. I wish you all the best, and I hope all your needs are met. Remember to breathe and take things one day at a time while getting as much support as you can for "yourself". All the best for now. Dixie.

In agreement with all of you. My mom has been with me 12 years and refuses help from anyone but me. She's now 88 with multiple medical issues but none that inhibits her from "needing to go out everyday". It's selfish for anyone to expect this of their kids. A friend is caring for her 95 year old mother with dementia. When I look into my friends eyes, I see the torment. It's like looking into my own eyes. It's an impossible task and I fear that a disease will eventually take me because of all my pent up frustration. Apparently statistics show as many as 40% of care givers die before the one they're caring for. So thankful for this site, it sheds so much light on the trials of care giving. Wish I had an answer but I don't. Blessings go out to all the kind hearts who are in this situation, whether they want to be or not. Do the best you can but find a way to release negative thoughts and emotions and rememeber, not only is it okay to have them, it's normal.

Without a doubt, stress is a killer. I was recently hospitalized with diverticulitis. This is only one of many stress-driven illnesses a caregiver may incur. My husband (75) has Alzheimer's and I (64) have been sole caregiver for over two years. This comes after caring for him when he had Stage III pancreatic cancer. That makes a total of over 5 years of caregiving and the stress finally took its toll on my health. My husband is medically and physically fine; he is mobile, verbal and generally healthy. He just lives in a world of delusion and tries to call Clint Eastwood, Donald Trump and President Obama on the phone. He has altercations with our neighbors and wears winter clothes when it's 100 degrees. He leaves dirty dishes and silverware all over the kitchen and living room and leaves sticky finger marks on the cabinets and drawer pulls. It's like having to run after a toddler, but a toddler eventually learns appropriate behaviors; an AD patient does not. I can't imagine how having an aide in the house is going to help me. She can't stop him from using the phone or walking around the neighborhood. Maybe I'm being pessimistic, but it's difficult not to be. The end result is the same: caregiving results in burnout and stress-related illness. It hits different people in different ways: migraines, digestive issues, backaches, joint ailments and the like.

ohdear, I respect what you are saying but it was harder for me when my Dad was in rehab/ assisted living than me taking care of him at home. I was lucky my Dad loved everyone and joked with everyone so all those caring for him took a little bit more time with him. As it was, we had to hire someone to be at the facility in the mornings to get him up, dressed and make sure he was taken care of. Otherwise he ended up in bed until we (family) got there. He ended up with a terrible urinary infection that was ignored by the RNs on staff for 3 days. There was blood in his catheter and no one payed any attention. Nor did they care that he was in incredible pain because of it. I know this is the worst example during his stay but the fact that we had to pay $125 a day plus hiring someone to care for him for 4 hours in the morning was more than we could afford. Of course, this was the worst case, but there were other situations where he was neglected and not cared for. We had a family member with him as much as we could during this time but I am glad I brought him home and would do it again in a heartbeat.

Ohdear, good point. Our parents did take care of us. But that was their job. And we eventually grew up and moved out on our own. I don't want my children to have to deal with providing me with hands-on care. They'll have their own families by then, their own careers, and will have to plan for their future. I've already decided that if it comes down to it, I want them to put me in a nice home, make sure I'm well taken care of, and if they can, make sure I have my own room. Yeah, I know, last one may be a stretch but one can hope right?

Ohdear, thank you for your insights and feedback. You raise some very good issues regarding professional versus personal caregivers on a team rather than individual basis. As you say, professional caregiver hours are limited by number of shifts, and are performed in a team environment with staff meetings and support.

My father lived for ten years in a nursing home and I have been taking care of my mother, live in, who has Azheimer's; high blood pressure; profound hearing loss; mobility problems from a hip replacement; arthritis and osteoporosis; no thyroid; one kidney and the other functioning below par; and mengionoma (forgive me for the misspelling).

My dad was placed in a nursing home following falls related to the side effect of Prednisone for a very painful, rheumatoid arthritic type of condition, as well as an iliostomy from colon cancer. Because he had tremors of unknown etiology (Parkinson's was ruled out), he could not change the ostomy bag and had trouble emptying it. My mother couldn't handle it and, to be honest, neither could I, although I did learn how to change the bag eventually and cleaned up a few accidents when he was out on a home visit.

When I compare the two situations, even though visiting dad required about 4-6 hours because of the distance involved, providing emotional support to dad was far easier than dealing with mom's needs. The staff were great, and would call me if he had a fall or if there was a change in his health. I developed a very close relationship with him, and he was genuinely pleased to see me - all it took were a few games of cards. The most painful aspect of it was saying goodbye to him at the end of the visit, because he hated being in there and was so lonely because he didn't socialize with the other patients. But he liked most of the nurses, and they were able to quickly stabilize him if he got dehydrated. We (my sister, brother, mother and I) had family meetings with the patient care coordinator to ensure he was getting good quality care. However, it was a very painful involuntary separation for all of us, especially mom and dad.

Yet caring for mom who is depressed, angry and looks back on her life with regret, is extremely taxing. I tried respite care for short while but her antisocial behaviours became too stressful for the worker, mom and myself that it was defeating the purpose so we discontinued that. It was much easier to place dad in a nursing home because he ended up in the hospital and there really wasn't anyone to fully take care of him (I worked part time, mom was ill with dementia and my siblings had their own lives). However, mom refuses to consider a nursing home and it's not as if she is physically ill enough to end up in a hospital, then the transition would be a more natural one. The stress of mental illness/dementia took far more of a toll on me. Even a couple of nights before dad died and I went to visit him, she incessantly called the room and poor dad would jump every time because of the noise. "Where are you, why didn't you tell me where you were", hang up, call again, rage. Even when we brought her in to see dad her behaviours were agressive and agitated. I felt so torn trying to address dad's and mom's needs at the same time, especially towards the end when dad was dying.

The two holds mom have on me are the fact that she looked after her mother who had a stroke and died when mom was a teenager/young adult, and the fact that she gave up so much for me because of my disability (she would have still been in her own country if it wasn't for me, and although she says she did it out of love, it was really a sense of duty and the resentment is there every day and comes out in so many forms). So as someone mentioned earlier, emotional slavery. Financial constraints are another factor.

Yet I can feel my life and identity becoming more and more constrained - I've had to give up my church activities although I will not give up mass on Sundays. I am blessed with being (albeit financially unsustainably employed), which keeps my mind active and gives me a sense of purpose in life. I love photography but there are very few opportunities to take pictures now. I know that eventually this will end, but I am far from perfect at this caregiving role.

I agree Razzleberry....About a month ago right in the middle of starting Hospice with my Partner, I was told I had to have a breast biopsy. I wonder what would happen to my partner. Well, lucky for me, I did not have cancer. But, had I been forced to face that, we would have done it together. I would have worked something out.

There are times when my partner was SO difficult during the time of getting his MEDS correctly administered. He weights 200 solid pounds and requires more than the average person to get them to work right. It took about a week of day in and day out around the clock care until we found the proper dosage. He was awake for two nights without sleep before we settled in.

I consider this time a wonderful time and a time to make memories for the rest of MY life. I took care of my mother also along with my brother's and sister's help. Family is family, and you do not walk away from them when they need you. This is a very short time in the days of our lives. Life is short...Part of it is a question as to what is next? No matter how bad things get, I would not exchange these times with him for anything at all.

Sure, the end will come and I will cry and cry and fall asleep crying. I will pray and sing to my Lord begging for His comfort. But again, I would not give up a second of these days with him when he needs me. The rest of his family is off doing whatever it is they do. They will not have the memories I do. That's ok...When they cry and say how sorry they are they were not there to help me, I will feel sorry for them not for me.

My 78 year old mother has lived next door to me for 4 years my father died 5 years ago. Mom has severe COPD and emphysema, never drove or had friends. My sisters at first refused to help because mom moved near me. Now they want to help abd its too late. Mom has become dependent on me for everything. She thinks the sisters don't know her needs, how to run her oxygen, how she likes things done. In a way it's true. If they would have been around from the beginning she would feel more comfortable around them and they would know her ways. Now I'm stuck. I begged them a few years ago to help me out. I developed stage 2 breast cancer and went through chemo and radiation 2 years ago and still got no help. I have severe diverticulitis with flare ups and land in the hospital. I have anxiety and back issued. I think the stress of taking care of my mom brought on some of my issues. I'm 54 and don't see an end to this soon. My husband is retired and we would love to travel, but that's been put on hold. My mom won't except any outside help either.

A 77 y.o. Forced? to be the only caregiver? and Forced? to not get needed surgery? How? I feel at a loss to understand how that can actually happen, unless it's not exactly what is happening.
That wreaks of the 97 y.o. being exquisitely manipulative, not to mention abusive towards the 77 y.o. daughter. This kind of stuff happens too often...the adult child guilted and gas-lighted into endless abused subservience to the parent, the adult child losing their life years before they get the release of death.
Whatever your age, if something like that is happening to you as a caretaker, it's TIME for good counseling, to learn better coping skills, and how to set realistic, rational limits on other's use of you....and to call in more help from various agencies, friends and neighbors!!!
I am glad you found your way to this site. People here have also been through it at length, and usually have good advice to share.
And yes...caretakers often become ill in the process of caretaking. Younger more resilient ones, not so bad, usually. Older caretakers get more stressed and sicker. And yes, it can kill a person. It nearly did me and my spouse in, with multiple ills that all came to a head towards the end of her stay with us. We finally got Mom out of our house, and have been using the last 4 yrs. to heal as well as we can, do the best we can.
First thing one must do though, is recognize something's haywire, then seek help. Finding and getting help can be a tough row to hoe, until the Universe believes you really want help to change the situation. It's up to you to decide what that change needs to look like, and ask "What's it going to take, for me to achieve _______?" when you pray or meditate.
Those of us who have existed in these kinds of circumstances for a long lifetime, might find it tougher to change tracks, to really understand what that behavior is. You need help, getting that kind of elder out of your house. For some, it's really hard to do.
Elders adamant that no one else can care for them? That's all in their twisted up brains. There are numerous solutions. Getting from where things are to where they need to be....that's the tricky bit.
But really? All it might require, is one hospitalization of either party, to resolve it....and a Doc willing to state in the records, that the caregiver is physically unable to do the job anymore, to get the ball rolling to put the elder into a care-home/facility quicker. Or at the very least, get in-home-rent-a-caregivers for some days weekly.
I hope you get the help you need, and soon! No caregiver should ever be held hostage by the person they are caretaking.
Please keep us posted!

KalaFW, I sure know that feeling. the same happened to me with my family. They all decided that they would take care of mom, well that lasted a couple of months, my sister could not deal with any of this, when she had mom I promised to come every time I got a vacation to give her a break, I would have gone, I'm close to my mom. they have a support staff up there, several family members and a house large enough to house everyone. My home is very small, Mom has now lived with me for over 2 years, they don't even call. When its time for vacation they inform me on how tired they are and need a break and they all go to Florida, I watch them posting pictures on FB and talking about what a wonderful time they are all having, I'm exhausted!!!! anytime I bring up that she was suppose to come to my house to help out on vacations she tries to guilt me by saying everyone deserves a vacation the guilt no longer works and when I tell them all off they are just floored.

Aveeno, i have found the excuses they make is out if guilt. They make themselves believe what they say to make themselves feel better. Shame in them! They have actually had the experience and know how hard it is abd they also know how much you need a break.

sstiqmama1 - I kind of wondered, yes its kind of like my sister and niece are talking to themselves while they are trying to convince me? Its very odd, they will make a statement and then come back before I answer and turn it into a question. for instance the conversation will go something like this - "When I had Mom did I tell you that you had to come every time you had a vacation? I don't remember saying that" before I even answer or make a comment she will start again, "Do I know you need a break and your tired" "Well Yes, but everyone deserves a vacation and I told you that I will go to Florida every year" Its very odd, I never even have to listen, its just like you said but I had never though of it that way, she is trying to convince herself that she is doing nothing wrong. hahahahahahah Thanks for the incite that explains so much

I really like that someone asked this question. My mom has had dementia for 10 years until just recently her husband was taking care of her. He would not receive help for anyone and he ended up passing away of a heart attack. I came to care for mom the next day. I told my mom when I came that I would care for her as long as I was able. I don't want to jeopardize my own health, so I have hired a home health care agency to come and assist with my mom so I can get out. I have as been a caregiver in an assisted living and private home health care but I got to go home. This is a journey I never expected especially without help I am so grateful that I have God in my life.

All good answers above. Living too long is not good for the caregiver or for the person being taken care of.....The parent is usually miserable every day, hour, minute past a certain age and becomes a mal-content. I got a rotator cuff tear.

Just spending a week on the couch at my mother's, in order to take care of her paperwork, housework, yardwork, and find a new live-in caregiver, was enough to get me bronchitis. Mom doesn't sleep well, so I couldn't. Nothing like having someone come and sit a few feet from you while you're sleeping to keep you awake. Staying at a hotel one night was a god-send. I'm going to have to get real; I can't stay with her. Looking like skilled nursing facility (she has late-stage Alzheimers) is next.